Welcome newcomers. We now have 35 members and anticipate many more in the coming months. Over 100 copies of Issue #3 have been mailed, and many members are sharing copies with physicians and organizations in their communities, helping to spread the word about us. Several of our new members are patients of Dr. Rich at UIC Medical Center, and I want to thank Lisa Kaufmann, RN for making copies of Pathlight available to those patients.
Would those who have so generously volunteered their time and talents please let me know what skills you can offer? Soon we will form committees to begin working toward our goals, and we will need leadership and committed individuals to do this. Please share any ideas that you may have to further our efforts. We are hoping to incorporate before the end of the year, and our goals are:
...to organize a national patients' association with regional and local support chapters.
...to make Pathlight accessible to those who need it but cannot afford it.
...to help family, friends, and each other understand the pain and fear we experience - coping.
...to educate the public about our disabilities.
...to promote awareness among family physicians who can aid in early detection.
...to encourage research and become informed of research in progress.
...to form a "collective voice" so that our needs may be heard among those who have more well known disorders.
PHA has evolved but I'm very proud that, despite the changes in scale, we have stayed true to the thoughtful and solid foundation our founders provided.
Thanks to Pathlight's current editor, Megan Mallory, you can now read the first three issues of Pathlight. When you get to the page, scroll down to Back to the Beginning.